When asked to describe herself in three words, 20-year-old Kiersten Hiltz thinks for a long moment and comes up with determined, advocate, caring.
Three pretty serious words for such a young woman but her short life has been a pretty serious experience.
Kiersten was born with spina bifida, which she describes as “a hole in my spine.” Surgery fixed it shortly after she was born but there was nerve damage, affecting her legs and leaving her with a visible disability.
The Cumberland Early Intervention Program referred Kiersten and her family, who live in Oxford, to a program called SMILE for children ages three to 21 who have physical and development disabilities (SMILE stands for Sensory Motor Instructional Learning Experience). The 15-year-old program is run by student volunteers from Mount Allison University in Sackville who play with 55 children every Saturday morning at the YMCA in Amherst.
“It’s an hour in the gym or crafts or baking or just hanging out with other kids or the volunteers and an hour in the pool,” explains Kiersten who began the program when she was six.
Of her first impression 14 years ago, Kiersten recalls a sense of belonging.
“You go there and you’re like everyone else. I didn’t get asked questions. It’s not the questions that bug me; it’s the stares and the gawks. You don’t get those at SMILE. Everyone is too busy having fun to notice. Acceptance is the big thing.”
Kiersten isn’t a loud person. She is quiet and pretty with a lovely smile. But her words make a loud statement when she describes the impact the program has had on her life.
“It’s the reason I am here today.”
She says she reached a low point when she was 13, in junior high.
“Kids at school were mean and I was considered different. They didn’t understand, they didn’t ask, they just made their assumptions. I was ignored a lot. Thirteen is a hard age for anyone but for someone with a disability, it is worse.”
She pauses to take a deep, calming breath. Although this is painful for her to talk about, she isn’t upset or angry; she is matter-of-fact. As if this is another level of acceptance she has reached about her life with a disability.
Going to the SMILE program every Saturday pulled her through those difficult times.
“When you go, you can talk to anyone,” Kiersten says. “You are friends with everybody there. It’s about acceptance. You’re not different. They don’t make assumptions. You just fit in. Relationships are a big thing. Some of my best friends come from SMILE. They’ve been my friends for ten years. I keep in touch with them all the time.”
She admits she doesn’t have many friends in Oxford.
“Halfway through my Grade 10 year, I developed a pressure sore and I was at home on bed rest for two-and-a-half years,” she says. “Only a few close friends and people from SMILE came to visit. I lost so many friends. They were too scared of what they didn’t understand. Bonnie [her longtime educational assistant] came to the house every day to help me with my schoolwork and she’d say, ‘So-and-so was asking about you’ and I’d think, Why aren’t they coming to visit me?” As Kiersten says each word, she smacks her hands together for emphasis. “Come here. I’m here. Don’t go through someone else. I’d known them since preschool. They knew me well enough to come.”
Although she graduated from high school at the same time as her peers, surgery forced her to put off attending college until recently.
“Going to college is better,” she says, “but there’s still a level of not fitting in because I can’t do certain things or go certain places. I find ways to go but it still creates anxiety for me. Once I get there, am I going to be able to get around? You really have to fend for yourself.”
When she says this, it occurs to me how close the word ‘disability’ is to ‘invisibility’.
Kiersten remains baffled as to why people are so reluctant to befriend a person with a disability.
“They don’t understand and they’re too scared of what they don’t understand. They don’t want to ask about it. I still try to change that but it doesn’t seem to work.”
Despite the hurt she’s endured, she remains determined to raise awareness.
“I try to talk to them, tell them it’s okay, I’m not going to give them what I have. It’s not contagious,” she laughs.
This is Kiersten’s motivation for enrolling in a one-year program at NSCC in Springhill called Community Disability Supports. She will put it towards a Human Services concentration with the ultimate goal of opening up her own program like SMILE. Part of her motivation comes from her own experience since 2010 as a volunteer buddy for a 6-year-old boy.
“I love it. It’s my entire life. It’s the light of my life,” she says with a beautiful smile. “If you’re having a crappy week, going to SMILE and seeing the kids makes it all worth it. There’s a little boy who has cerebral palsy and he is the happiest kid I’ve ever seen. He has severe cerebral palsy yet he’s so happy. It gives you a perspective check.”
The three words I would use to describe Kiersten Hiltz?
Courageous, compassionate, inspiring.
For more information on the SMILE program, go to www.cumberlandeip.ca